Chris Anselmo is a writer, coach, and advocate who is passionate about resilience and personal growth. Through his newsletter “Hello, Adversity,” he explores mindset shifts, overcoming challenges, and the realities of living with a rare disease. He also runs a coaching program designed to help people take action on long-held dreams, regardless of the obstacles they face.
Chris’s journey with resilience began in 2009, when he started experiencing symptoms of limb-girdle muscular dystrophy type 2B (LGMD2B) at the age of 21. An active young adult at the time, his diagnosis forced him to confront an uncertain future. Over the years, through trial and error, he developed strategies that helped him adapt, pursue his goals, and ultimately redefine what success looked like for him. One of those strategies was writing—a tool that became both a personal outlet and a way to support others navigating their own challenges.
He spoke at the 2020 NORD Living Rare, Living Stronger® patient and family forum in a workshop titled “Psychology of Rare: PTSD, Depression, Evaluation, Diagnosis & Therapy,” which you can watch on YouTube here.
In this interview, Chris opens up about his journey into writing, the lessons he’s learned, and how he’s using his experiences to support others.
What was it like to have your life interrupted with the sudden onset of your rare disorder?
When I was first diagnosed at 18, I expected my condition to progress much later in life. But when I became symptomatic at 21, I found out it was going to happen much sooner than I expected. It started as a kind of subtle muscle weakness while going for a run after work, and then, when I was moving to an apartment a few months later, I started having issues carrying heavy objects up the stairs. That led me to see a neurologist, who reconfirmed my diagnosis.
I went from graduating at 21 with full mobility to learning that I basically had about 10 years left to walk. You can imagine that was a big challenge. Over the next 10 years, I gradually got weaker; I started falling, I could no longer climb stairs, and I wasn’t able to run anymore. All of that was obviously difficult, but what I struggled with the most was the mental and emotional impact of it all.
How did you cope with your diagnosis and the changes it brought?
It took a lot of trial and error for me to figure out how to cope, accept what had happened, and move forward with my life. Growing up, writing was always the subject that I was best at. After my diagnosis, I was asked to share my patient journey with a small foundation that’s working on my disease. That was really the first time I put what I was going through in a sort of a narrative context. And it was really a powerful moment for me, because, for one, it reconnected me with something that I enjoyed, which is writing, and for two, it helped me to see the impact of continuing to share my story — that maybe this was something that would be valuable for both myself, but also for people that might come across my story.
That led me to blogging, but I decided I wanted to write about something other than just myself and create something that gave back. I became really interested in understanding how people cultivate resilience and how to become more resilient myself. I realized that sharing what I had learned — both from personal experience and research — could be valuable to others. Writing became a way for me to reflect on my journey.
That’s how my newsletter, “Hello, Adversity,” came to be. “Hello Adversity” isn’t about being inspirational, at least that’s not my focus. My focus is on making difficult topics — like mental health, dealing with failures and setbacks, or finding hope — more approachable. To do that effectively, I weave my personal story into those subjects, but I also make it audience-focused by sharing takeaways, tips, and insights people can apply to their own lives. I’ve found that approach really resonates with a lot of people.
I was originally going to call the newsletter “Goodbye, Adversity.” And then I realized that wasn’t realistic, that we’re always going to face adversity. So, the “Hello” part is a recognition that it’s always going to be there. Everything I write about is how to be comfortable with it and how to live in the midst of adversity. It doesn’t mean you have to like it. It’s just like, “Okay, it’s here. I don’t like it. But, I now have tools and strategies to deal with it.”
What has writing taught you about resilience?
By breaking things down into steps, like the process for overcoming imposter syndrome, I’ve been able to put into words things I used to do without thinking much about them. Doing this has allowed me to better understand these subjects and how different topics are related.
Some of the pieces that stand out most to me and have received the best reactions are the ones that lean more toward personal essays. Ironically, I started this to move away from personal essays, but I’ve come to recognize their impact. Even in those essays, I always try to include something people can take away — whether it’s a new perspective or actionable insights they can apply in their own lives.
One of the key moments in my own journey was learning to ask for help. I wrote about this in the post, Out of the Abyss, where I share how I finally broke free from the isolation I had built around myself.
What types of stories would you like to see more of within the rare disease community?
I enjoy hearing stories where someone shares their personal journey, from diagnosis to the full arc of their experience. But I really enjoy the day-to-day stories too, like, “this is the issue I had today,” because it gives you an insight into someone’s world. Sometimes, a little detail about somebody’s journey can shed light on the entire journey. And I think those stories are humanizing. The more stories that are shared, the better, especially because with rare diseases, everyone’s experience is unique, yet many of the emotions, feelings, and challenges are common across the community.
It’s also important for broader exposure — people who don’t have a rare disease might come across someone’s story and learn a lot from it. In the best-case scenarios, someone might read a story and realize that someone in their family has the same disease, or that their own symptoms closely resemble those shared in the story. I’ve heard of situations where someone reads an article from someone with a rare disease and either recognizes their own symptoms or identifies them in someone they know, which then motivates them to seek medical attention and ultimately receive the correct diagnosis.
We would love to hear a little bit more about what else you are working on.
One is a book. It doesn’t have a title yet, but it’s a collection of 100 lessons from my rare disease journey. It includes short essays on various things I’ve learned, such as cultivating resilience, dealing with adversity, and taking action. I also cover topics like effective planning, handling failure, dealing with comparison, finding acceptance and confidence, and other overarching life lessons.
I’m also coaching adults with rare diseases. My hope is to help people who have put their goals or dreams on the back burner, whether because of their diagnosis or other health challenges, and who may now wonder if those goals are still possible. I guide them through the steps to achieve their goals, thinking back to what would have helped me years ago.
Lastly, what’s one piece of advice you’d give to someone facing their own rare disease journey?
First, know that you’re not alone. When you have a rare disease, it can often feel isolating, especially when there aren’t many people with your exact condition. The emotional struggles and challenges you face are shared by people not just with the same disease, but with other rare diseases and chronic conditions as well. Second, don’t be afraid to reach out — whether it’s talking to someone, asking for help, or seeing a therapist. It’s not fun to admit you’re struggling with something; everybody wants to make it seem like they have their act together. But the thing is, everybody needs help.
One key realization for me over the years has been that everyone is going through something. I’ve had conversations with friends who’ve shared struggles I didn’t know about, or they’ve read something I wrote and said, “I’m going through the same thing.” It made me realize that the emotions we often bottle up are shared by many, though it’s not always easy to talk about. The takeaway here is that the challenges you’re facing are not unique. While the details might differ, the feelings are often the same, and recognizing that you’re not alone is half the battle.
If you’re interested in reading more from Chris, subscribe to “Hello, Adversity” today.
Here are some of Chris’s most popular posts mentioned during our conversation:
- Out of the Abyss – My story of how I learned to ask for help
- Why It’s So Hard to Ask for Help – Overcoming barriers to asking for help
- Making the Ask – How to make an effective ask
- Life, in Between Hope and Despair – How I’ve found hope in dark times
- Keep Going – About persevering through adversity
Have your own story to share? Send it to NORD at [email protected] and help inspire and educate others both inside and outside the rare disease community. We may feature you here on our blog!